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523707 tn?1212472541

Feet feel "full", pain with walking, ankles swelling, full body edema not cardiac related

In 2005 while on vacation, I was fine for the first 3 days.  When I woke up on the 4th day I couldn't get my rings off.  I couldn't stand on my feet.  My ankles were so swollen as were my feet.  My hands looked like someone stuck a needle in them and blew them UP!  I put 15lbs of fluid on in 48 hours. I'm a very thin woman.  I was 57 when this happened. Although my medical history reads like fiction, it's all true.  Fortunately, everything I've had was backed up with lab results, xrays, scans etc.  However, I would give anything in the world to not have any of the things I do, the fact that they are "visible" to treating physicians makes it much easier for me!  I've had 7 back surgeries and I'm fused from L3 to S1.  L2 had a laminectomy, I had an 11mm kidney stone that was removed with Lithotripsy.  I have severe full body edema now. No one can figure out why. I have had 2 very detailed cardiac workups and although I have mitral valve regurgitation, and P.A.T., there isn't any congestive heart failure or any other reason for this fluid retention.  I wasn't bit by anything on vacation to cause this edema.  And since it's 2008 now, if something like that had happened it surely would have gone away by now.  When I had this onset of edema, I had a rash on both legs that also just appeared that morning.  They were from the knees down on both legs. It was a brownish/reddish rash but only lasted 2 days.  Then it disappeared. However, this fluid retention hasn't disappeared.  In fact it's gotten worse.  My primary care doctor sent me first to the cardiologist, and that dr. sent me to a nephrologist. That doctor said I had Lupus.  He said the double stranded DNA test came back at 169 and the normal high was 39.  But my primary care doctor ran further more extensive tests and they all came back as normal. However, I was sent to a rheumatologist just in case.  I sat in that dr.'s office for 2 hours waiting to be seen. I asked the receptionist if the dr. had an emergency. She said that it was always like this.  I said "I've had numerous back surgeries and I can't sit 2 hours and wait for anyone!"  In the meantime, while waiting, I noticed a gallary of pictures on this dr.'s wall.  They looked like graduation pictures. Something like what a family would have hanging in their house.  I looked closely at them and it had their names, dates of birth, and the day they SUCCUMED to LUPUS!!!  I made my husband look at them  because I couldn't believe this doctor was actually hanging pictures of his patients that had died due to the very disease they were seeing him for!!!  It was then I decided I wouldn't be seeing him.  However, right then I was called back.  When he came in he was baffled as to why I didn't look the way my medical history read!  I found myself defending the fact that I tried to not let me look on the outside how I felt on the inside.  We obviously didn't get along.   I also was seeing a Pain Specialist who had diagnosed me with RSD.  I also have Arachnoiditis that was diagnosed my MRI.  I also had an EMG and was found to have severe carpal tunnel in my right wrist and De Quervains syndrome in my left hand/wrist.  I had surgery for this de quervains syndrome and because of how painful that was, there is no way I'm having another surgery on my wrist!!  When I wake in the morning is the worst time of the day.  My feet are burning, swelling, and just to stand on them causes such pain.  My hands always tingle....feel like they are "waking up" but it's very painful.  I can't wear any of my rings anymore due to this edema.  I've always been very thin, and even now, no one can believe me when I say what I weigh.  My doctor keeps telling me not to worry about what the scale says since it's all water.  That doesn't matter to me.  I DO care what the scale says, I DO care as to why I'm in so much pain, and I want this fluid to go away!!  I'm on Lasix everyday.  I had been on Bumex, 3  in the morning....and all the fluid went away...for one week.  Then it all came back and then some.  I've been tested for cortisol levels, diabetes, etc.  Everything comes back normal.  It's driving me crazy.  Now they found a 7mm "lesion" in the middle of my liver and I will be retested in 10 weeks regarding that.  Also my common bile duct is dilated and I'm supposed to have an ERCP to find out why.  My doctor knows something is wrong but not one doctor can figure this out. I had my gall bladder out because it wasn't functioning and ended up with a septic infection from the surgery!  At times I just want to give it all up.  But then I see how much my family loves and needs me and would crumble if anything happened to me.  Living with pain that is so severe that being on high doses of Dilaudid daily barely helps isn't how I wanted to live my life.  Do you know if the RSD could be why I have this edema?  I know it can cause fluid retention, but the pain in my feet and the swelling in my toes ankles, and basically my legs is just more than I can bare!!  I need someone to help me and everyone I've seen just scratches their heads saying that they can see the edema, all you need to do is push your finger into my ankles and the indentation remains....they run test after test and except for the fact my organs seem DEHYDRATED, they have no answer as to why my vascular system is leaking into my tissues.  Is there any possible thing you have to add to this strange disease that I could take to my doctor and ask him to check it out?  I honestly, REALLY need some help.  I do have a question though. I've only had the regular fasting glucose run on me.  I've wondered if they should do the type of glucose testing that they do with pregnant women.  I was diagnosed years ago with Polycystic Ovarian Syndrome (PCOS) however after having peritonitis, they did a total hysterectomy on me including the removal of my ovaries.  I thought that once all those organs were gone the PCOS would be gone.  But after talking to PCOS specialist they say that since it's a Pituitary/Adrenal gland problem, that I could still have problems with it.  That's why I wondered if I should have this more detailed glucuse test run.  I have a niece with Juvenile diabetes.  My grandfather on my father's side had diabetes.  My grandmother on my mother's side had Hypoglycemia.  We have diabetes throughout our family and when I read up on it, I see myself in their literature at times......especially this burning, tingling, swelling, ankle feet problem.  I wear TED stockings all the time to try to help the swelling and pain in my legs from the knees down.  There has to be a reason for this.  And I'm sure it's right in front of our noses but I think it's such an obvious thing that no one is paying attention to it!  PLEASE, PLEASE reply
Sincerely,
Lil plum
4 Responses
Avatar universal
I have the same problem with walking now. Ankls are so stiff and swollen even on 200mg of lasik a day. Been going on for 3 months nowand have had so mant tests that came back normal.
I do have cardiomyopothy (17 years ) All cardiac tests including a catherization, normal for someone with thiis.
Cat scan of abdomen was clear. Veinous dopplar was fine.
Now am with a kidney specialist who has told me as of yesterday I only have 35% kidney function.
More to come in an appointment next Tuesday.
Other specialists looked at labs for 3 months and never connected GFR scor or 31 to be a problem??????
Should I pursue the lack of concern in a legal way?
Avatar universal
Hello,
     i was on the internet to try to find some information for my mother...she seems to be going through something very smilar to what you are going through, lilplum.  

let me start form the beginning..    after years of seering stomach pains.....they finally found out that she has a bunch of kidney and gallbladder stones....some very large.   anyway, she went in a few weeks ago to get her gall bladder removed laparoscopically.   she had to pause her hapatitis treatments (interfuron, i believe) to have the surgery.   after going home a day or 2 later, she started having swelling in her abdomen and one leg.   it got worse and she went to teh emergency room....and they admitted her.   my mother, who is a small woman, swelled up and at one point had a 48 inch waist.    and of course...no one knows what it is.   she was discharged, saying that there is no more tests that they can run in the hospital.   she was in terrible pain .....on morphine in teh hospital....and on Dilaudid (like you).   a few days later...she was back up there.....they evidentally ran every test in teh book, and found nothing.   they discharged her again.  

she is now home in pain all over her body.   they did drain anywhere from 3-5 litres of this fluid out of her on her second stint in teh hospital.     but she has swellled up again....we dont knwo if it from pooling from  the fluid in her limbs...or if her body is actually developing more of it.   everyone is in "sit and wait" mode..    and with her in that much pain......is no fun.   she is on diuretics also.....but if they ARE helping...its not dramatic...  

please.....there are alot of similarities between your story and hers...   if you can tell me anything that you think might help....somethign i can suggest to teh docs.....i would be extramely grateful.  

please help!!
523707 tn?1212472541
Dear Terry,
This is a shot in the dark, but has your mother ever been testes for what they call "Shadow Diabetes?"  There is another type of diabetes called LADA (Latent autoimmune diabetes in adults) that will put on sudden edema for "no reason."  I would suggest your mother see an endocrinologist.  This type of doctor handles hormones, and glands, and all sorts fo things that can cause this sudden onset of fluid retention.  I also would have her common bile duct checked.  Sometimes after a gall bladder surgery, before they get the entire thing out some stone "sneak" into the common bile duct an it's easy to diagnose and also correctable.  I have many added problems that my doctors think are contributing factors to my problems.  One is the amount of pain meds required due to RSD, Arachnoiditis and Cauda Equina besides 7 back surgeries, and more.  But I would get her with a good endocrinologist and ask this person to see if she is retaining urine in her bladder (does she have urinary tract infections often?  That's a dead give away.  Please keep me posted.
Lil Plum (Cathy
937805 tn?1319621388
Try eating radishes, dandelion tea, and mega parsley, and cilantro. Lasix does nothing for me other than make me feel sick. Good luck.
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